Sister just diagnosed

SydSyd, we've been talking about your sister's situation in some PMs but I thought I would move the discussion back here so that others can contribute as well.

With regard to DCIS and the question of whether or not it can spread, here again is what I mentioned in my recent PM:

DCIS and IDC are the same cancer.  The difference is only the point at which it's found.  Most IDC develops from DCIS.  When the cancer is found at the stage that it's DCIS, it means that the development of cancer has started, but the cancer cells are all still locked in the milk ducts.  So the cancer is there, it is growing, but it's completely confined to the milk ducts and can't escape. DCIS cancer cells cannot move into the open breast tissue.  And cancer cells need to be in the open breast tissue in order to have access to the nodes or the bloodstream.  So DCIS cancer cells cannot spread. Over time however, most cases of DCIS do evolve to become invasive cancer. The DCIS cancer cells undergo one final biological change and develop the ability to break through the wall of the milk duct.  At that point, the cell converts from being a DCIS cancer cell to being an IDC cancer cell.  It's the same cell - it's just progressed in it's development.  It might take 20 years for this to happen or it might take 1 year - nobody knows. Some speculate that some DCIS might never progress. There are factors that indicate which cases of DCIS are likely to progress more quickly but at this point the scientific knowledge on this is very imprecise.

What this means is that for anyone diagnosed with DCIS via a needle biopsy, there is a risk that that when all the cancer cells are examined under a microscope, a few of those cells will be found to have already undergone that biological change and will have become invasive.  In my case, I had a 1mm microinvasion - there was a 1mm area within my 7cm+ of DCIS where my DCIS cells had already evolved and broken through the wall of the duct and thereby become IDC cells.  If that is found to have happened, then the diagnosis changes from DCIS to IDC and then an SNB becomes necessary.  But if that hasn't happened, if all the cells are DCIS cells - safely locked in the duct - then the cancer cannot spread and an SNB isn't necessary.

The following drawings from this website help explain the progression from hyperplasia to atypical hyperplasia (a condition which presents approx. a 25% risk of breast cancer) to DCIS (pre-invasive breast cancer) to DCIS-Mi (DCIS with a microinvasion) and then full blown IDC:

http://www.breastcancer.org/pictures/types/dcis/dcis_range.jsp

As for the question of the SNB, personally I would not do one if my biopsy only showed DCIS and I was having a lumpectomy.  After DCIS is found in a needle biopsy, there is about a 10% chance that some invasive cancer will be found once the entire suspicious area is removed.  For those with high grade DCIS, the risk is probably higher - maybe 20% (that's just a guess).  Given the risk of lymphedema (according to the women on the LE forum who know this stuff, it's approx. 7% - 10% for those who have SNBs, maybe higher) and the high likelihoood that an SNB won't be necessary, personally I wouldn't have one - if I was having a lumpectomy.  Should any invasive cancer be found, the SNB can be done afterwards. What your sister's doctor said about the scar tissue making the SNB more difficult after the lumpectomy is not something I've heard before; doing the SNB afterwards is common practice and in fact is consistent with DCIS treatment guidelines. Honestly, it sounds to me as though the surgeon is making it up on the fly so that she gets to do the operation the way that she wants to do it.

I do appreciate your additional concerns due to the fact that your sister's cancer is ER-/PR-.  If a microinvasion is missed in the breast tissue pathology, and if cells from the microinvasion have already moved into the nodes, without the SNB there's no way to know this and your sister won't be having any treatment (specifically, Tamoxifen) that would address this possibility (of which there is only about a 1% chance) and reduce the risks of further invasion. If it were me, what I would do is get a 2nd opinion on the pathology after the surgery.  I'd have another lab and another pathologist go through the slides of my breast tissue.  I would guess that the chances that a microinvasion might be missed would be a whole lot smaller if two sets of eyes review the slides. So for me, instead of having the SNB and exposing myself to a lifelong risk of lymphedema, I would use a 2nd opinion on the pathology as the extra assurance that there was no microinvasion. 

That's how I would approach this situation. Your sister has to follow the approach that she is most comfortable with, whatever that may be.   

Thank you for the website .. checking it out, right now.Vicki

Sydsyd, I'm glad that your sister's surgery went well.  What the doctor said after surgery is all that she can say.  Frankly even saying that "she got what she needed to get" seems like she's saying too much because there is no way to know this for sure without having the pathology report.  Any information about the cancer, whether the margins are clear, whether there was any invasive cancer, etc. all needs to wait on the pathology report.

Given that your sister is ER-/PR- and didn't have an SNB, if it were me, I would get a 2nd opinion on the pathology - assuming that it shows pure DCIS.  I would want that to be confirmed.  I'm not sure about the need to see the PS before radiation, however.  Plastic surgery is optional and whether it's necessary depends on how the breast fills out after surgery (and this can take months to happen as the breast tissue moves around and fills in the gaps) and how your sister feels about the appearance of her breast.  Women who have reconstruction after a lumpectomy usually do this quite a bit after everything else is done.

I can't answer the question about when radiation should be started, but I'm sure that someone will be by here soon who can answer.  As for chemo, given that so far the diagnosis is DCIS, I wouldn't go there.  Even if invasive cancer is found (which would then require the SNB), chemo might still not be necessary if the nodes are clear and the amount of invasive cancer is small.  

I've been following your sister's story and I am thrilled at the outcome. All the best to you and your family.

Sydsyd, I haven't had much time for the board over the past couple of days and have been meaning to let you know that I'm so pleased that your sister's results look good - all DCIS!  That's great news!

Do you have the info yet on the margins? I'm curious how close the closest margin is, since the surgeon is saying that a re-excision is necessary.  How interesting that after all that the surgeon said about her low re-excision rate and that she "got what she needed", it turns out that a re-excision may be necessary after all.  Fortunately in the scheme of things, it's not a big deal at all.